My New Liver

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

It is very, very hard to obtain an organ transplant in the United States. First, there are so few organs available. Second, it is hard to locate a transplant center willing to do coinfecteds -- that's what they call you when you have a virus like HIV with hep B or C. Third, if and when they accept you, you have to wait in line. Depending on which part of the country you are applying from, and which medical center, it takes varying amounts of waiting time. It never happens quickly. There is far too much red tape and bureaucracy for that. Fourth, and perhaps first, you have to do an awful lot of investigation, research, phoning, faxing, e-mailing, pestering, even (how shall I put it?) raising your voice (politely, of course) to accomplish any of this. Patient empowerment takes on new meaning. You have to become a very fervent activist, for yourself. If you aren't feeling so hot then you need someone with persistent and unflagging energy to do it for you. You need such a person even if you are feeling great. A transplant is something you simply cannot enter into on your own. In fact, no transplant center will accept you if you cannot show that your support system is visible and strong.

But if you know you are going to die if you don't get a new organ, as was my case, you'd be surprised what a motivation this can be. I was given six months and was down to the wire when I finally got the call. At 67 I am the oldest person thus far transplanted with a new liver. My surgeon says in all seriousness that you are as old as your liver. I now have the liver of a 45-year-old man. Each day I feel vital and vibrant. I have no side effects. My hepatitis B appears to be gone from my body. And I truly feel like I am 45 again. Everything I went through was worth it, tremendously so.

You must investigate the half-dozen or so medical centers (the number is growing) that will take us. You must never stop your efforts to a) make a transplant surgeon evaluate you and b) get one to accept you. Many people apply to several different centers, but that can be very expensive. There are a lot of evaluation testing costs you must bear before you can be officially accepted, and your insurance, if you have any, picks these up only if and when you are accepted for transplant. I was lucky. There happened to be a spurt of interest in transplanting coinfecteds when I applied. It helps to be a scientific curiosity. I believe I was the 22nd coinfected to be transplanted. The NIH is currently preparing a research protocol to study transplants for conifecteds; one of these days it will be approved and you might qualify for that.

When you finally find someone willing to accept you, you have to figure out how to pay for your transplant. No medical center will take you unless you can prove up front that you can pay. Not long ago if you were coinfected and looking for a new liver, you would have been turned down by your insurance company because saving your life was considered experimental. That's changed because of heroic surgeons like John Fung at the University of Pittsburgh Medical Center who knew better and proved it and confronted the insurers himself. Still, insurance companies usually have to be challenged if they turn you down, which on the first go-round they usually always automatically do, hoping you will not appeal. Medicare rejected me the first time but we appealed and in one day they had reversed their decision. Empire Blue Cross, my secondary insurer, accepted me immediately.

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My liver transplant has cost Medicare, so far, over $500,000 and Empire Blue Cross, so far, over $100,000 for the continuing medications I must take, including a monthly pop of some $10,000 for something called Hepatitis B Immune Globulin, which I believe I must receive for the rest of my life. And you need to get your blood tested every few weeks. That costs a lot too.

So we are not talking about an easy or inexpensive ride here. The easiest part, believe it or not, was the transplant itself. I wasn't in any pain, ever. The recuperation period is long; getting your wind and motor abilities back can require many months of physical rehab and taking it easy. You must have patience, which I don't. Months of not doing anything can verge on the depressing. And if you don't live near a transplant center, you may have to move close by for the months of the whole process. My lover and care partner (two different people, and I couldn't have got through the process without either one of them) lived with me in Pittsburgh for many months. I needed the love of my partner, David Webster, every single minute. Boy did I need it. This is lonely and cosmically metaphysical stuff to live through. (One day they tell you you're going to die, and then suddenly you don't.) Hugs and kisses and smiles and homemade food and constant gentle urgings that "you can do it" sure help you get better faster. And I was not an easy patient. I know that. And I needed the bossy efficiency of my very own Nurse Ratchett, Rodger McFarlane, who had every secretary, nurse, technician, and doctor at Presbyterian Hospital extra-attentive to his patient's case.

I was additionally lucky because I was able to meet the criteria for acceptance last year. I don't think I would have qualified under new guidelines, called MELD (Model for End-Stage Liver Disease), which came into effect at the beginning of this year. The guidelines were developed by the Mayo Clinic, and consciously or unconsciously, MELD criteria appear to be blatantly discriminatory against coinfecteds. As I understand them, and very little about the current or past organ allocation system is understandable (even by the doctors who get the organs), the abnormal blood markers they look for to be considered for acceptance are not ones that people with HIV typically have out of whack. For instance, my PTT, bilirubin, and creatinine were not greatly elevated. But I was still dying and my liver was still conking out. Yes, you say "go figure" a lot in this whole process. And figure you do ... or else you die.

Alas, most people in need of new organs don't make it. My memory is filled with haunting images of desperately sick people in the UPMC clinic waiting room hoping for a chance to grab an arriving surgeon's arm and literally beg him or her for a liver. And of the stories of uninsured recipients telling me how everyone in their entire family or indeed community or indeed town had sold everything they could to pay for their chance at life.

It shouldn't be like this, of course. We know all that. It is not right to have a system that excludes most of the people who desperately need its services. Yes, I know that I have been very, very lucky. I can shout "Persistence!" to the world but all activists have learned the hard way: we don't get anything without a terrible fight. If we want to live, we must fight like hell. And the fighting must never stop.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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